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What to expect after deep brain stimulation surgery

Deep brain stimulation can be life changing for people with movement disorders like Parkinson’s disease or essential tremor, but that transformation doesn’t happen overnight.

What can you expect following your deep brain stimulation implantation and activation? We asked a pair of University of Minnesota Health experts to tell us more about the recovery process, including common side effects and challenges that patients often face.

What can you expect following your deep brain stimulation implantation and activation? We asked Orcutt and Neurologist Scott Cooper, MD, PhD, to tell us more about the recovery process, including common side effects and challenges that patients often face.

Four to six weeks after the surgery, patients begin meeting with Orcutt and her colleagues to program the deep brain stimulation device. Together, the patient and care team “tune” the device so that it delivers the right amount of stimulation to minimize symptoms. Orcutt will see patients regularly until they have identified the appropriate DBS settings. During this time, Orcutt also adjusts patients’ medications.

“This process takes time,” she said. “There is no formula because everyone is unique. It all depends on a patient’s condition, where the electrodes are in the brain and what they can tolerate.”

Typically, patients will establish their optimal stimulation settings in two to three months following surgery, according to Cooper. “Sometimes it happens faster, and sometimes it takes longer,” Cooper said. “In some cases it may take a year to find the correct DBS settings.”

Expect some side effects, but the procedure is not very painful.

In the weeks and months following a DBS procedure, patients may experience some side effects, depending on medications and the initial programming. The side effects can include abnormal sensations, numbness, tingling and involuntary muscle contractions. Often, patients may also feel some discomfort related to the device’s neurostimulator (or battery pack), which is implanted under the skin near the collar bone.

Fortunately, the recovery time for the surgery itself is relatively short, and most patients can quickly return to their normal daily routine while they work with experts to program the device. Aside from a few days of post-surgical pain, which doctors treat with a mild analgesic, DBS patients typically do not experience much pain.

“Barring any complications, pain is not usually a big factor,” Cooper said.

You can make at-home adjustments to your deep brain stimulation programming.

The latest generation of DBS devices allow patients the ability to adjust their stimulation levels within certain limits, in addition to the adjustments made by their doctor and nurse. This gives some patients a greater degree of active participation in their treatment. Those who are not comfortable changing the settings themselves can leave all the adjustments to their patient care team.

“Together, we navigate the space between the side effects and therapeutic benefits to find the optimal settings for each individual.” Cooper said.

Remember to be careful.

Cooper cautions his patients not to over-exert themselves—even after the DBS device is working and a patient’s symptoms have decreased.

“Occasionally, people feel a lot better quickly and are so excited about their improved quality of life that they engage in risky behavior and fall or otherwise injury themselves,” he said. “The device doesn’t make you a superhero. Some limitations still exist.”

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